Update

Surgery was successful. It went smoothly. I am recovering. Good news to hear. Neurofibroma removed.

Until today. I don’t like turning something cheerful into something gloomy. I am feeling ok despite the news today.  Still processing everything, I’m sure it will be on my mind as the days, and week goes on.

I went for a post-op follow up to the surgery on August 9. I was originally supposed to see a nurse practitioner but it was changed to the doctor yesterday morning. I thought good, I get to ask her questions and get answers instead of waiting till September 3.

I had a short list of questions ready to ask the doctor.  I forget what was said before, the usual wound is healing well, I am doing ok etc.

It turns out this is not a neurofibroma, despite biopsy saying it was one. The new diagnosis after the specimen was reviewed by pathology is low-grade fibromyxoid sarcoma. The same pathologist actually looked at this tumor.  Well, it brings up a whole new list of questions and answers.

I will have additional surgery, to remove more margins. Because why remove the amount you need to with a sarcoma, when you think it is a neurofibroma. That is understood.

I will have to wait till this scar tissue heals before the next surgery, which should be less of a recovery. I will need to be back on crutches then for a short amount of time, hopefully.

Then MRI every 6 months, for the next 5 years. I hope to continue in the protocol I am already in at the NIH, that will scan my body, and show anything that spreads which will supplement these scans.

OK enough for now. Originally though to be a sarcoma ends up being one. I am glad it was removed and not put off because it was just a “neurofibroma”. Imagine later finding out, it doubles in size and being a higher stage sarcoma. I will press on, as I always do. The only thing keeping me up is trusting n God. He has brought me through every surgery, provided for all my needs, answered prayer even when I didn’t pray. I know I will get through this, it is just another bump in the road.. “I can do all things through him who strengthens me”